Topic: New Member

After my diagnosis last month I have had a whirlwind of activity, but finding a consistent and informative source of information seemed impossible - until now.

I am 55 years old in March, married with two grown-up step-daughters and also our 10 year old daughter at home. I run an IT Operations function for one of the major UK cultural Public Sector institutions, and I am being treated at St James' Hospital, Leeds, West Yorkshire in the UK.

The "high" [ironic] points thus far:

Since 2010 I had experienced acute reflux 3-4 times per year, my GP had diagnosed it as such and treated me for this. I had put the cause down as in part stress-related.

In September, 2012 however, I had the same symptoms coupled with vomiting, agonising pain in my upper right chest and a high fever which lasted until 0400 the next morning. I made an appointment to see my GP the next day, as when I looked in the mirror I was obviously also jaundiced (I have not had these symptoms since).

My GP gave me a letter and instructed me to travel to the local hospital and get admitted for an ultrasound scan, as he suspected an escaped gallstone. I arrived at the hospital in early afternoon and was seen by the Registrar at 1830 (in between I had an IV drip inserted and a notice was posted above my bed stating "Nil by Mouth" around 5 minutes before a hot lunch was served to everyone but me <sigh>).

The Registrar was of the opinion that the gallstone had already begun travelling out of my body, and offered to admit me to hospital that night for an ultrasound the next day (although being a Sunday he was doubtful), or alternatively having one the next week as an out-patient; I chose the second one and went home to dinner. My discharge letter from the hospital noted "deranged LFTs" and "bilirubin down 161 to 43" - whatever that means.

My ultrasound occurred in early October, and I then received an appointment for three days later with a consultant colorectal surgeon. He opened the conversation by looking at my record on his computer system and telling me I hadn't had a scan. I replied I had, I then spent 30 minutes waiting for the scan results to be found and added to the system; I was then informed that the results were being faxed through, the consultant would review them and send me a letter containing the outcome later that day.

I received the letter a week later (the consultant had indeed written up his findings that day, however it had taken his secretary a further 5 days to type the letter). The day before I received an appointment for a CT scan which baffled me until the next day, when the consultant's letter explained.

The letter confirmed that I had gallstones and said that the bile duct, spleen, pancreas and kidneys appeared normal, however stated that there was an "abnormal area" on my liver that the radiologist suggested needed a CT (CAT) scan. The letter also said that in due course an MRI scan of my bile ducts might be needed. I had my CT scan a week later, and a week after that received a letter from the consultant which said "The CT scan performed recently to investigate the liver lesion seen on your ultrasound scan suggests that this is fat deposited within the liver. However we would like to perform a further scan called an MRI to investigate this....no other abnormalities were seen other than a fatty lump within the transverse colon. The pancreas was normal".

The MRI scan was run in the middle of November, and I then received an appointment to see the same consultant as before on 12th December, 2012; I had concluded that, whatever the underlying problem was, it wasn't critical because of the gap between the scan and the appointment. Imagine therefore my surprise when I was ushered in to see the consultant, and he introduced me to a MacMillan Nurse. He explained that "sadly" he would have to refer me to a specialist in Leeds, as the MRI scan showed an abnormality in my liver which had the appearance of "a cancer arising in the liver, or possibly arising in the bile ducts within the liver". The consultant said that the specialists in Leeds would determine the best treatment option.

From here on in things moved with some haste. My wife and I met with an Hepato-Pancreato-Biliary (HPB) Surgeon at Leeds St James on 17th December, 2012. He explained that my scans showed the presence of a "large likely intrahepatic cholangiocarcinoma involving completely his IVC as well as both left and right portal veins. Although the left hepatic is patent, the fact that the tunour extends across to the umbilical fissure makes him at this stage unsuitable for an R0 resection (complete resection) of his tumour" (the quotes above and below are from the letter from the consultant to my GP, which I requested and received a copy of).

I asked what my prognosis was after chemotherapy, which is what the surgeon recommended, and he said anywhere from 6 to 18 months, however he stressed also that there are a number of variable factors, and that a lot depends on the outcome of the chemotherapy. We asked if surgery might be re-considered post-chemotherapy if it were successful in shrinking the tumour, and he agreed (his letter confirms this part of the conversation but adds ".....although in my opinion it is extremely unlikely"). He also recommended a liver biopsy and a PET Scan before seeing an Oncologist, and I was assigned a Specialist Nurse as my single point of contact.

My wife and I decided we would focus on having the best family Christmas and New Year ever before telling them, and that's just what we did.

I had the biopsy on 23rd December, 2012, (and felt my existence "stutter" just after they pushed the button.....), then the PET Scan on 28th December, and then finally an another appointment with the HPB Surgeon on 21st January, 2013 - at which stage I rang my Specialist Nurse and she arranged an Oncologist appointment for 11th January, 2013 (see, I'm beginning to learn).

The Oncologist said that the PET Scan confirmed an intrahepatic cholangiocarcinoma of 15cm in size, that it had not metastasised elsewhere, and recommended a 12-week programme of gemcitabine and cisplatin chemotherapy (four 3 week cycles, chemo Week1 and 2, Week3 a rest week), followed by another PET Scan. We agreed, and I'm at the end of Week3 of the first cycle. She also said she viewed the chemotherapy as active rather than passive (palliative).

I guess some of my comments above could come across as derogatory to the medical profession, however this is absolutely not the case. For most of my life I've been ridiculously healthy (if increasingly unfit). Every nurse and doctor I have met has been clearly professional, interested and caring in their approach, even though they are under sustained pressure of work. If I had one constructive criticism it is that some of the administrative and workflow processes seem unnecessarily prolonged or are missing. (a 20 page A4 booklet for admission to hospital which needs to be filled in by a Nurse then checked by the ward sister, then at various stages other documents which need to be filled in and which ask the same questions again?)

I'm lucky in that I have few chemotherapy side effects thus far, namely insomnia (=get more exercise during the day), inflamed knuckles on both hands (=aqueous cream), slight abdominal discomfort rather than pain (=lots of little chemo elves cutting away at that pesky tumour).

Latest news is that my tumour marker (CA19.9) score on 24th January was 529, down from 624 on 17th December, however I'm told they look for a trend across the full chemotherapy cycle. Still, a good start.

I've initially taken four months of extended sick leave from work, we met with a MacMillan advisor who applied successfully on my behalf for Disability Living Allowance, (terminally ill patients qualify - meaning <6 months to live by their definition), and also had help from MacMillan Financial Advice (piloted in Yorkshire since 2011), and also with the local Hospice specialists (I had always imagined Hospice services were solely deployed at the end of an illness, but was delighted to learn they offer a range of counselling and complementary therapy services).

I've also begun to put financial affairs in order, so that my wife and children have as financially stable a situation as possible, and, of course, I'll need to make a will.

I stop smoking tomorrow (I started when I was 11), I've joined a gym to build up core body strength, and I've totally changed my diet to more or less exclude all meat save fish and the odd piece of chicken (lentil shepherd's pie anyone?), I tell myself I love Brussel sprouts and all forms of vegetables and fruit - and it must be working because I feel great.

The lessons I have learned thus far from this unlooked for experience are:

1. It's OK to cry. When something so shattering happens it's all right to cry. It's a human reaction and it will make you feel better. It is also OK to curl up in a ball in the corner for a while and attempt to deny the undeniable - just so long as it doesn't become a permanent condition, because after that you have stuff to do.

2. It is also OK to get angry - so long as you channel that anger into productive activity.

3. Own your condition. Patients should not be passive, but should actively pursue understanding of their condition and of treatment options, and should build relationships with and interact with carers on a basis of mutual respect.

4. Make a list of all the things you ever wanted to do and, while you are still able, get as many of them done as possible (including finally fixing that yard gate).

5. Confound expectations - make a plan. We have just celebrated our daughter's tenth birthday. I will bend my every effort to be there for her next one.

6. When you are told you need to be admitted to hospital and you have a choice between a local one which is close or a regional centre which is further away, choose the latter every time.

Apologies for the ramble. Future posts will be short and to the point. I am so pleased and relieved to have found this fantastic resource.

I have some questions on the above and welcome all opinions and advice.

1. I've read a number of forum posts which advocate getting second opinions on treatment approach. Should I seek a second opinion on whether surgery is an option, and if so should I do this ASAP or await the outcome of the chemotherapy? (I saw a reference elsewhere in the forum to Professor Peter Lodge)

If the chemotherapy is unsuccessful would I still have options for a Whipple or a liver transplant?

Re: New Member

Hi Jim,

I would like to welcome you to this site, but I am very sorry that you had to join. I enjoyed reading your post and loved the lessons you have learned. My daughter, Lauren has CC, and she has learned most of the same lessons!! Great minds think alike, right? I am glad you are not having too much trouble with your chemo. It took my daughter a long time to finally be diagnosed after seeing local doctors. We took her to a large hospital in Michigan where she was diagnosed quickly and put on chemo immediately. She has been on chemo since Sept. 2011. We advise to get a 2nd opinion if you are not happy with your current doctor or your doctor is not very experienced treating CC. Once we went to Michigan, we have never felt the need for a 2nd opinion. Lauren's oncologist is top notch as is her surgeon. She was told at first that she could not have surgery, so she continued with chemo. She has just been told she can have a resection now. We are thrilled and hope this will give her a chance at a longer life. As for chemo not working, in Lauren's case, her doctor changes her chemo when one seems to become less effective. I'm sorry I don't know the answer for surgical options. I'm sure your doctor will know best about that. I wish you all the best on your journey. Take care and I hope to hear from you again.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: New Member

Jim...what a lovely introduction you posted on our site. I love reading every bit of it especially the six lessons of life. This is a very special place with incredible, kind and caring people. You have come to the right place - so glad that you have found us.Jim, as far as I know, the UK does not offer liver transplantations for this cancer, but searching out another, opinion from a physician very familiar with this cancer, should be an option for those wanting to do so.I also wanted to mention that we have several great UK members, all of which I hope will also greet you. Additionally I would like to make you aware of AAMF, the UK’s only cholangiocarcinoma charity. http://www.ammf.org.uk/The website does not provide a discussion forum however; it has excellent information.So glad that you have found us. Please, stay in touch. We are in this together.Hugs,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New Member

Hi, I will recommend 2nd opinion by a liver surgeon or specialist to check out the options. Every surgeon is different in their skill,experience and mindset in their decision making process. I am not a doctor,but I met a lot of them in my work place. Base on what I can extract from your message, both your right and left lobes of the liver are involved; as well as the major blood vessels too. The size is relatively large at 15 cm . CA19-9 >129 is indicative of cholangiocarcinoma (CCA) and your's is 529. In my experience being around this site and read a lot about this disease; most surgeon will say no in your case. And therefore systemic chemotherapy is the most logical treatment plan for you at this point in general unless you can find a surgeon like Dr. Kato at New York Pres. Hospital who has a history of taking risk to treat patients that were refused by other surgeons. I think you can find someone like him in UK too.Below is a link for UK cholangiocarcinoma patients and hopefully you can find your answer.http://www.ammf.org.uk/cholangiocarcino … t-centres/To your last question, either way is fine. The reason is simple, if your current chemotherapy works and shrink the tumor, it may provide a better chance for resection at the next surgical consult. If the chemotherapy does not work, it won't make that much difference if your next CT scan is in March or so. I suspect you have this disease way before December ,2010 since CCA is relatively a slow growth tumor.God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New Member

Hi Jim,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear what you are going through. But I am glad that you have joined us all here as you have come to the best place out there for support and help, and I know that you will get a ton of both from everyone here. Thanks so much for sharing your story with us all and please, no apologies are needed for the length of your posts!

I too am in the UK, in Dundee in Scotland. I came here after my dad was diagnosed back in 2008 and he was treated with PDT at Ninewells here in Dundee. Like you, he also got the services of a Mac nurse after his diagnosis for filling out the same forms and she was with dad since then. Got to say that she was a great help to dad and us throughout and I hope that your Mac nurse will do the same. I also had the need to phone their helpline a few times to speak with a nurse and that was a great help at the time.

Not too much that I can add to what the others have already said to you but I wanted to welcome you here. As to liver transplants in the UK for CC, unfortunately that treatment is not an option for CC patients at the moment but who knows, maybe and hopefully it will be one day. I think that a trial may be on the cards at some point in the future but not anytime soon I think. But do not give up hope. You sound very positive and have a great attitude and it souds to me like you are up for this fight. Yes a second opinion is an option and the links to Helen's AMMF site that Percy and Marion have given you will help with much infor re doctors and treatment centres in the UK.

As to lentil Shepherds Pie, think I will take a pass on that and perhaps stick with the real one! My dads specialist said that minced beef was a good thing for him to eat as it was easier for him to digest and break down. The sprouts thought I am certainly up for!

I hope that you keep coming back here and I look forward to hearing more from you. And if you have questions then ask away and we will do our best to help in answering them.

My best wishes to you,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New Member

Hi Jim,

I'm sorry that you've had to find the site but there is so much support and advice you have come to,the right place.

I am also in the UK and My 41 yearbold sister was diagnosed very unexpectedly in October. Surgery on December 17th to remove most of her liver was unsuccessful but she is working towards getting chemo. You are so right about being treated in a regional centre. Logistically it can be stressful but in terms of care and specialisms there is no comparison and essential in my book.

Re: New Member

Hello Jim and welcome to an amazing site.I too am in the UK although I was diagnosed and treated in France. I love your newfound lessons, but please remember to laugh every day, I found it to be a wonderful tonic.I wish you all the luck in the world and if you ever want a buddy to chat please contact me.Take good care of you.Sandiex

Re: New Member

Marion,

Shepherds pie, made with minced lamb, carrots and stock. Topped with lovely mashed potatoes and baked in the oven, nice! Replacing the minced lamb with lentils, I'll take a pass on that and stick with the lamb me thinks!

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New Member

You are most welcome Marion. Shepherd pie is made with lamb mince and a Cottage pie is made with beef mince. I bet that you are glad that Jim didn't mention changing his toad in the hole recipe!

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New Member

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New Member

We are indeed the UK's only cholangiocarcinoma charity - lots of info on the website, and we will always try to find out answers/info for those who need it ...

To underline what has been said for Jim - here in the UK (under the NHS) you are entitled to a second opinion with a named surgeon and/or oncologist of your choice. Treatment should always be under the care of an MDT knowledgeable and experienced in CC, and definitely should be at major hospital rather than locally.

Treatments and drugs used in the UK and the US may differ because, as I understand it, in the US and Canada, clinicians are allowed to prescribe fairly much what they like without an evidence base - something which we aren't allowed to do in the UK as NICE dictates things on hard evidence...with properly formulated clinical trials - which leaves little room for manoeuvre.

This can be very frustrating for us here, for example in the case of liver transplantation for CC - we see the good results being achieved in the US (albeit with a stringent protocol and small numbers), and many of our consultants and researchers have visited the Mayo to learn about this first hand, and come away convinced by it ... Yet it is not available at all to anyone diagnosed with CC.

Re: New Member

Helen...thanks so much for chiming in and sharing the important advice with our UK members. Your input is very much valued and appreciated. Would love to see you do this more often. Thanks for everything you do, dear Helen. This is not a cancer conquered by any one country rather, it is a disease that requires cooperation globally. And, I believe, dear Helen that we are heading that way.

Hugs,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New Member

Hi JimJust a quick post to say hallo. I too am in the UK (Devon) and was diagnosed with CC in October 2010. I was lucky enough to be eligible for resection, which was done in my regional specialist centre in Plymouth.

I really cannot add anything to what Helen Morement has said about treatment for CC in the UK - I think it can be frustrating at times, and you really do have to fight your own battles sometimes ( or have someone great to fight them for you). AMMF is a wonderful source of information and inspiration for me and many others in our CC family.

I can really associate with your list - it reads much like the one I have carried in my head for the last 2.5 years. Keep working at it.....

Re: New Member

Thank you Marion!

I would love to get on to the discussion boards more regularly, but we have so much going on over here there never seems to be enough hours in the day!

You are so right - we do need global co-operation on this one. There is often considerable confusion over the treatment paths for cholangiocarcinoma that seem to differ from country to country. However, hope may be on the horizon - last year the The International Liver Cancer Association decided to produce their first ever International Guidelines on liver cancer and have chosen to do this on cholangiocarcinoma.

There will be representation from five countries on the International Expert Panel, including Dr Shahid Khan, one of AMMF’s advisors, and Dr John Bridgewater from the UK.

Last year, for the first time in 10 years, a completely revised "Guidelines for the Diagnosis and Treatment of CC in the UK" was published (something AMMF was extremely pleased to be involved with) and this is now available to all from our website:

The information expressed is not medical advice. The discussion boards are not intended to replace the services of a trained health professional or to be a substitute for the medical advice of physicians or other healthcare providers. Read the full disclaimer.